My name is Alev Sen. I’m the main researcher on a study of treatment for AKU in UK healthcare. The study is sociological which means it will focus on the way AKU and relevant treatments are understood and approached. It is not a medical research study which could affect your clinical care. The study is part of my research PhD in sociology at the University of Cambridge. The AKU Society has supported the project and kindly invited me to post about my research on their blog. In this blog I give a bit more detail on the study and background on how I came to work on AKU.I have always had a strong concern for health and welfare. I worked on the impact of welfare reforms for people claiming disability benefits at Citizens Advice and co-authored the first rare diseases patient experiences report at Genetic Alliance UK. After my BA in Cambridge I studied for an MSc in Social Policy at the London School of Economics (LSE) focussing on the ways public services are designed and delivered.In planning my PhD, I attended some of the events and patient workshops of the AKU Society. I also met staff at the National Alkaptonuria Centre (NAC) at the Royal Liverpool University Hospital. It seems that despite new treatments for AKU, understanding about the experiences of patients, carers, healthcare and charity staff is limited. This PhD study aims to improve this. We hope to find out how support and medical care for AKU patients could be improved. The study has been designed to protect the safety, rights, wellbeing and dignity of all who decide to take part. As it is taking place in the NHS it has undergone and passed ethical review by an NHS Research Ethics Committee.The research is in three parts. We are inviting patients, carers, healthcare and charity staff aged 17 years or over to tell us their experiences in interviews. We are also asking patients at the NAC if I can observe some of their appointments, and analyse medical documents related to their treatment there. We will use information from the study to find out if there are ways that make receiving medical care better or easier and if there are ways that make it less helpful or harder.There will be opportunities for updates, and we would welcome feedback, questions and comments at any point. You can also receive a summary of the study and its anonymised results if you wish.We will share updates on the progress of the study, and I welcome feedback on the research project more widely, including future posts on the AKU Society blog. This will mean that for people who are not taking part, there will be opportunities to be involved.
If you are interested in finding out more about the study or to discuss taking part, please get in touch with me. I will be happy to discuss with you any questions you may have. My contact details are:
Alev Sen
Department of Sociology
University of Cambridge
16 Mill Lane
Cambridge CB2 1SB
Email: alis2@cam.ac.uk
Work telephone: 07522 303915
The AKU Society have also offered to provide further support to you if you would like to receive it during or after the research. If you would wish to contact the AKU Society, you may do this direct (please contact: info@akusociety.org). I will also be able to provide this information at any time during the research if you wish.